CC BY-NC-ND 4.0 · Yearb Med Inform 2020; 29(01): 051-057
DOI: 10.1055/s-0040-1701980
Special Section: Ethics in Health Informatics
Working Group Contributions
Georg Thieme Verlag KG Stuttgart

Ethical Use of Electronic Health Record Data and Artificial Intelligence: Recommendations of the Primary Care Informatics Working Group of the International Medical Informatics Association

Siaw-Teng Liaw
1  WHO Collaborating Centre on eHealth, School of Public Health & Community Medicine, UNSW Sydney, Botany Road, Kensington, NSW 2033, Australia
,
Harshana Liyanage
2  Clnical Informatics and Health Outcomes Research Group, Nuffield Department of Primary Care Health Sciences, University of Oxford, Eagle House, 7 Walton Well Road, Oxford, OX2 6ED, UK
,
Craig Kuziemsky
3  Office of Research Services, MacEwan University, Edmonton, Alberta, Canada
,
Amanda L. Terry
4  Centre for Studies in Family Medicine, Department of Family Medicine, Department of Epidemiology & Biostatistics, Schulich Interfaculty Program in Public Health, Schulich School of Medicine & Dentistry, Western University, Canada
,
Richard Schreiber
5  Internal Medicine and Informatics, Geisinger Health System and Geisinger Commonwealth School of Medicine, Camp Hill, PA, United States
,
Jitendra Jonnagaddala
1  WHO Collaborating Centre on eHealth, School of Public Health & Community Medicine, UNSW Sydney, Botany Road, Kensington, NSW 2033, Australia
,
Simon de Lusignan
2  Clnical Informatics and Health Outcomes Research Group, Nuffield Department of Primary Care Health Sciences, University of Oxford, Eagle House, 7 Walton Well Road, Oxford, OX2 6ED, UK
› Author Affiliations
Further Information

Publication History

Publication Date:
17 April 2020 (online)

Summary

Objective: To create practical recommendations for the curation of routinely collected health data and artificial intelligence (AI) in primary care with a focus on ensuring their ethical use.

Methods: We defined data curation as the process of management of data throughout its lifecycle to ensure it can be used into the future. We used a literature review and Delphi exercises to capture insights from the Primary Care Informatics Working Group (PCIWG) of the International Medical Informatics Association (IMIA).

Results: We created six recommendations: (1) Ensure consent and formal process to govern access and sharing throughout the data life cycle; (2) Sustainable data creation/collection requires trust and permission; (3) Pay attention to Extract-Transform-Load (ETL) processes as they may have unrecognised risks; (4) Integrate data governance and data quality management to support clinical practice in integrated care systems; (5) Recognise the need for new processes to address the ethical issues arising from AI in primary care; (6) Apply an ethical framework mapped to the data life cycle, including an assessment of data quality to achieve effective data curation.

Conclusions: The ethical use of data needs to be integrated within the curation process, hence running throughout the data lifecycle. Current information systems may not fully detect the risks associated with ETL and AI; they need careful scrutiny. With distributed integrated care systems where data are often used remote from documentation, harmonised data quality assessment, management, and governance is important. These recommendations should help maintain trust and connectedness in contemporary information systems and planned developments.